Having a really bad day :(

PenJ

Hi everyone,

I just needed to vent to somebody, I'm thirty and have spent most of the day, lying on the floor on cushions with my 2yr old and 4yr old playing "quiet" games cause i have really bad pelvis inflammatory pain and I'm so exhausted from my RA that I feel nauseous when I get up and move about.

Lying here I am beginning to wonder if any medication is ever going to help the fatigue, I am due to start anti TNF on Monday, but trying not to get my hopes up too much incase it doesn't do much. Am starting to have thoughts about having to give up my career as a physio, ive have dropped to just 14hrs a week, light workload, but after a 7hr day yesterday, I find myself in my current situation, typing on my ipad slightly teary thinking what's the point!

Sorry to be so glum, not going well today. Im hoping that somebody else out there might have a smiley success story to brighten my day, or some handy tips on balancing RA, kiddies and a job......or advice on those who changed there balance and how it changed their symptoms

Hope this message finds others well and coping with their arthritis on this lovely sunny day :P

Pen

stickywicket

I've no tips on how to balance work with RA and children. I had to give up the former once I got the children and the RA decided this time it wasn't going to desert me ever again :roll: Neither did I have pelvic problems. But I do remember some truly awful times when the boys were young.

All I can say, in terms of encouragement, is that for me it did get better. I have to admit that two new knees helped enormously but at least nowadays I'm in less pain and I'm much happier than I was then.

I don't wonder you're fatigued if you're holding down a responsible job too. I do hope your new meds will help but it might be that something has to give.

elnafinn

Hi Pen

I hope you are feeling a wee bit better now from when you posted. I am sorry that I have no advice for you as I am so much older and have OA and other things but what I have will not help you!

I think it would do you good to have someone to chat with if you still feel the same tomorrow. Why not give the Helplines a call, number at the top of the page. Just talking with someone could help and they may well have some good ideas too.

Gentle hugs
Elna x

PenJ

Thank you x

Gonna give the help lines a call, would be nice to chat things through with somebody X

elnafinn

Aw, bless you, dear Pen. I think talking to someone in the wonderful helplines team will be of great benefit. It is good to talk to another person who understands and they do. A problem shared is a problem halved. If you would prefer to talk to a female member of the team just say when you get through. I hope you do not have to wait too long before you get through as I understand the lines can get busy.

Gentle hugs
Elna x

elnafinn

PS The helplines are open from 10.00 to 16.00 hours weekdays.

(((h)))

lizzieuk1

Hi Pen,
I can totally relate to your situation, I'm an osteopath and currently struggling with RA, been flaring since my 2 year old was born and miscarriage in march caused all hell to let loose!
Have been off work since as just couldn't cope, is a nightmare as I am self employed so my clients are having to wait or go elsewhere, v frustrating after building up the clinic but hey ho I can't control my body!

Anyhow I have been on enbrel for 2.5 weeks now (after 9 years on methotrexate and various others) and good news is its def helping I feel less tired and my plain levels have reduced, not enough for me to work but certainly a relief. Am hoping it will continue to improve. I really hope you respond well too, there's no telling but lots of people do well on them so no reason you won't.
I've had to call in lots of favours from family and friends to care for my son and do chores etc, I was really glad I asked them for help as they've all been fab, so supportive.

If u need a chat feel free to pm me, sounds like we're both in the same rocky boat.
Xx

maria09

Hi Pen
Hope you are feeling a little better
I have no advice to give just my support
I was lucky my Arthur didn't start to kick in until my two were 6 and 8 and gradually got worse over the years it must be so exhausting for you
I hope you managed to contact the helpline
Let us know how you get on
Maria

PenJ

Hi all,

Thanks for all your support as always.

Had my appointment for what I thought was to start anti TNF today, turns out it was just another assessment to check i was bad enough to put in a application for funding for the meds. Well my DAS score was the worst it's ever been 6.89 so it's all go for the application. First time I've ever thought being so crappy is useful.

She said, it should take around 2-3weeks to get the application approved, then they contact the drug reps, who then contact me to arrange delivery of the meds and then they come to teach me how to do it, so all being well I should have meds in the next 6-8weeks - this was the point at which I burst into tears..... So silly I should know better by now not to focus on timescales etc, but when you feel low, it's hard not to be emotional.

Anyway, have decided to try and focus on getting through this flare up so have decided to get signed off work for my two days at work this week and try and rest........is this what everyone else does or do they just carry on going to work and just wait for things to calm down?

Hope everyone feels well and comfy out there

lizzieuk1

Hi there,
Glad you've got the go for anti tnf, when I got mine I didn't have to wait for funding approval so was a bit quicker, also once they have it the drug suppliers can get it to you in a few days, I know this as my mother wrote a stinking letter and amazingly drugs arrived the following week, I didn't bother with the demo as is v easy to administer, I'm sure you'd be fine to go ahead without - just like an epi pen really and they come with instructions! would speed up the process for you a bit.
I would nag them a bit as u can get them quicker if you pester them enough!
Think mine arrived about 2.5 weeks after rheumy gave the go ahead.
I've seen about 50% improvement straight away but now plateaued so a bit mis.about that.

lulubell69

I really feel for you Pen
I was 35 with three young children, one with severe disabilities, and there were many many days I couldn't even get out of bed. Now, 9years later it has been a long roller coaster ride. I've tried all possible meds, yesterday I had an anaphylaxis reaction from an infusion. Anyway, I found the best meds for me were humira and enbrel, they worked for a couple of years. Hopefully the anti Tnf will give you your life back, lots of good kind people on here so keep in touch.
Take care
Les

maria09

Hi Pen
Hope you are having a better day
Big hugs ((((( ))))
Maria

DebbieT

I hope ure feeling a little better today?

(((Big hugs))) x

fowls48

Hi Pen


I have been known to go into the warehouse and fall asleep , or sit in the cupboard and read a book It must be very hard for you having young children so full of energy , mine are now teenagers so are able to do there own thing of an evening .Hope you are feeling better today .



Fowls xx

PenJ

Hi everyone,
After being signed off and having two days at home with the kiddies at nursery and resting am starting to feel a bit better, headaches are easing, along with my joints and so am feeling like i can cope a but more again. Looking forward to one more rest day off work, then back to it but with more enthusiasm and hope that this improvement is here to stay for a bit.
Thanks for all the support,
Pen

dreamdaisy

Sometimes we find ourselves between a rock, a hard place and an even harder place. We have to pace ourselves according to the demands of the disease and then fit the rest of life in too. I take it you have read the Spoon Theory and There's a Gorilla in my House; if not please do because they give very good explanations of what we are up against and they can help those around us to better understand. DD

PenJ

I haven't read either, but will look them out and have a read, especially if its something i can guide my family towards, they have a hard time too really, either having to change either plans because of me, or just feeling helpless themselves to help but want me to feel better. Hopefully they could help x

PenJ

Well best made plans etc. Was due back to work wed, on Tuesday i woke with a sore throat and lots if joint pains, but didn't think much of it. As the day went on i slowly began to get a temp. By 9:30pm it was 39c. I knew a sore throat n temp and methotrexate was not a good sign so called nhs direct. I then had to head to out to the out of hours gp, by the time i got there they had been called out. They sent me next door to a&e. When i finally got seen i had a bp of 75/30. After iv fluids and iv antibiotics they said i had tonsillitis and gave me tablet antibiotics and sent me home.
What was surprizing was how little they appeared to know, or be bothered about my RA meds. They didn't know why all my joints were so painful, they said that having RA didn't impact on anything, they said to continue to take all my dmars as normal and id be back to normal in a couple of days.
Ive left a message with my rhemy nurses hotline for advice but has anybody else had an infection with high temp whilst on dmars?
Think i was just a bit surprised by the apparent lack of rheumatology knowledge i encountered, its also got me thinking about wearing a medical alert bracelet, especially as in due to start the biologics in the next 4-6 weeks.
Does anybody else wear one?
Hope everybody out there is feeling well and comforty x

maria09

Hi Pen
What an awful experience for you
The thing with A & E is they have to know a lot of things but they are not specific to certain conditions unless they have recently had experience and as we know Rheumatology has such a varied type of conditions and many many types of medication they may not come across us as often as we think
I worked on an orthopaedic ward for many many years and did not know fully the extent of rheumatology conditions out there until I got Osteo Arthritis 10yrs ago and spondylo arthropathy 4 yrs ago did I get an understanding and empathy for my patients
Some staff thought I was too soft with the patients but I said its because I know what they are going through
I hope to start to feel better soon
Maria

stickywicket

I'd endorse all that Maria has said. A&E docs, by their nature, are not rheumatology specialists, or specialists in any other area. It's always a good idea to keep your little blue (well, mine is) book on you for such emergencies - the book in which all details of your blood tests are recorded.

I have an medic-alert bracelet. (Memo to self - get it updated :oops: ) It doesn't have to be a bracelet. There are also necklaces and, I think, other ways of doing it.

DMARDS work by suppressing the immune system so we are more prone to infections and also find it harder to deal with them once they've arrived. I hope you'll soon feel better. I think ringing your rheumatology helpline was a good idea.